• The IPF Patient's Experience with Prednisone

    Posted by Charlene Marshall on April 14, 2018 at 11:15 am

    Hi Everyone,

    I was talking recently with a friend of mine who has started prednisone for her new diagnosis of pulmonary fibrosis, secondary to treatment for leukaemia as a child. She is having a really hard time managing the side effects of prednisone, and would actually like to advocate coming off of it despite her doctors wanting her to remain on the steroids. This is also a similar experience to a new member of our forums, per her recent post and as a result, I thought I’d start a discussion thread about managing the side-effects of prednisone.

     

    This steroid can certainly be hard to adjust to taking, and it does have a long list of unpleasant side effects that go with it. That said, usually our doctors weight the benefits against the risks and find that it is still helpful for people living with IPF, especially when dealing with increased inflammation, virus, infection or an exacerbation.

    • Are you on prednisone regularly (if so, what dosage if you would like to share) or do you just have to take in periodically in response to falling ill?

     

    • What side effect(s) did you experience most while using prednisone?

     

    • How did you manage the side effects of this steroid?

     

    A particularly difficult side effect of prednisone for me is dealing with the mood swings and irritability. I have yet to find a good way to deal with this when I am on prednisone, and so I just isolate myself as much as I can. This isn’t helpful for me or those who love me and want to be supportive….

     

    Please share your experiences with this steroid so that others can be aware of the ‘normal’ side effects, and obtain information on how to manage them.

    Thank you in advance!
    Charlene.

     

     

    Terry Moriarty replied 2 years, 11 months ago 21 Members · 98 Replies
  • 98 Replies
  • Cliff Cleary

    Member
    April 17, 2018 at 3:32 pm

    Hi Everyone,

    I was diagnosed with IPF in September 2015, I was taking Pirfenidone until November 2017 when I was diagnosed with Anca Vasculitis. I was put on Prednisone for the new diagnosis and then taken off the Pirfenidone as doctors were concerned there might be a reaction with the two drugs.

    I started on 30mg Prednisone and it was helping my conditions enormously, the doctors started to reduce the dose gradually until I got to 7.5mg  (daily) but my condition worsened and I was put back up to 15mg. I’m now on 10mg.

    On the high dosage I had a few side effects including the shakes, mood swings, sleeping problems but on the lower dosage I don’t have any issues.

    Cheers

    Cliff

    • Charlene Marshall

      Member
      April 18, 2018 at 10:09 am

      Hi Cliff,

      Thanks for taking the time to respond to my thread regarding prednisone!

      So interesting to learn about the potential drug interaction between prednisone and pirfenidone, this isn’t something I’ve heard of so I am glad to be aware of it. I am on OFEV, but something to be mindful of if I ever switch over to pirfenidone. Sorry to hear of your additional diagnosis of Anca Vasculitis.

      Sorry to hear about your side effects on prednisone high-dose, although based on my experience with this steroid it doesn’t really surprise me. When you say it was helping enormously for you, did you notice a reduction in your IPF-related symptoms then? For the 10mg you’re on now, do you think they will taper that down or leave it as so if it is working for you?

      Sleeping I am having major troubles with right now, although I don’t know if it is the prednisone or not. Thanks again for sharing Cliff.

      Warm regards,
      Charlene.

      • Cliff Cleary

        Member
        April 18, 2018 at 3:24 pm

        Hi Charlene,

        I’m not sure there’s any reaction between Pirfenidone and prednisone, I’m still waiting to hear back from doctors.

        While I was on 30mg prednisone it did help my IPF symptoms quite a bit, the only problem is I’m not sure if it was the Anca Vasculitis or IPF that was the major problem as they both have similar symptoms. The doctors are also unsure as they haven’t had many if any patients with my two diseases together.

        I thought I was on a high dosage of prednisone but going on Terry’s post mine is quite low. I’m not sure what’s going to happen with my dosage but the 10mg is not enough and I have been told they want to get me off it as soon as they can.

        Cheers

        Cliff

         

      • Charlene Marshall

        Member
        April 18, 2018 at 8:09 pm

        Hi Cliff,

        Thanks so much for clarifying about not yet being sure about the relationship between prednisone and pirfenidone. Once you hear back from the doctors, would you mind sharing what they say? I would find it interesting even though I am not on this combination of meds, and I am confident others would as well. This is just one of those situations where the more knowledge the better 🙂

        Would the prednisone treat both the IPF and the Anca Vasculitis then? I know prednisone has so many healing properties, even if it does come with negative side effects, that it is used in the treatment of many different diseases.

        Hmmm, I hope they can find a balance for you soon regarding your dosage. To hear you say 10mg isn’t enough, but that they want you off it is puzzling. I wonder if there are any other similar steroids out there that would have such drastic success in helping patients with a life-threatening condition like IPF but without the side effects? I know many times there are interchangeable other steroids, such as one of the inhaled ones I am on called Symbicort. I can no longer inhale strong enough for the turbuhaler, and have now been put one that is similar but not as difficult to take for me.

        I hope everything works out though and that they find a balance for you soon. Keep us posted on how you’re doing if you wouldn’t mind.

        Cheers,
        Charlene.

      • Susan Howitt

        Member
        August 28, 2018 at 10:25 am

        Hi Prednisolone (spelt slightly differently here) has been a life saver for me, before diagnosis I was put on it at 4 tabs, by doctor, nasty side effects and did nothing to ease the day and night cough, since seen a lung specialist and back on the prednisolone a 1/2 tab per day, what a change, coughing stopped and no side effects. Am due to go on Pirfenidone tomorrow but will put it off until November for personal reasons. From what I have read the two tablets are totally different the former being more or less a anti inflammatory and the latter being an anti fibrotic drug.
        I have CPFE

      • Charlene Marshall

        Member
        August 28, 2018 at 7:29 pm

        Hi Susan,

        Thanks so much for getting in touch with us, and sharing a bit about your experience. Are you in Australia by chance? I met with an Australian friend last year who was recovering from a lung transplant and I think he called it Prednisolone as well. It sounds familiar to what it is called there 🙂

        I’m so fascinated to hear that the decrease from 4 tabs to 1/2 tab per day was so effective for you. What a difference it sounds like it made to have the dose reduced. Glad the side effects are better for you! In terms of the Pirfenidone (Esbriet) and Prednisone, yes the two are very different and sometimes used together (I think anyways, not in my experience but I know others who are on both) and sometimes not. The Pirfenidone is specific to IPF management, and Prednisone can help many different illnesses due to its anti-inflammatory properties. You are correct!

        Can you share what CPFE is? I’m curious to learn more about this.

        Thanks in advance, glad you’re part of our forums 🙂
        Cheers,
        Charlene.

      • Susan Howitt

        Member
        August 29, 2018 at 2:01 am

        Hi Charlene

        I am in France, don’t think I could live in the heat of Oz, struggled enough this summer unable to breathe with the heat and the pollen.

        CPFE combined pulmonary fibrosis and emphysema. The two diseases fight each other in your ability to breathe as one gives more elasticity to the lungs and the other the contrary and the gas exchange is compromised. Don’t know a lot about it yet as there is VERY little research done into how to treat in fact little is known, all I know is that my prognosis is very poor as it is also possible I can’t go on to pirfenidone because of my lack of one kidney. Yes pirfenidone is specific to IPF which I haven’t got, I have PF from a known cause, there is some debate as to whether Pirfenidone is good or bad for CPFE Will know more after this afternoon as RV with specialist.

        A bientôt Sue

      • Charlene Marshall

        Member
        August 30, 2018 at 1:02 pm

        Hi Susan, bonjour!

        Ah, I bet where you live is beautiful. It is on my bucket list to someday get to France! I hoped to visit various parts of Europe this coming September, including France, but unfortunately due to a decline in my lungs, my medical team vetoed any travel outside of my own country right now. Maybe someday…

        Yes, I visited Australia 3x (once since diagnosis) and it is very hot in the summer months. That said, it feels like a different kind of heat because there isn’t the humidity like most places have. Maybe because it is surrounded by the sea, I’m not sure. The pollen has been pretty bad this summer, I agree. I hope it is on the way out for you and all of us respiratory sufferers.

        I’m so sorry to hear of this CPFE, it sounds awful and if possible, even more difficult to manage than regular PF/IPF. Was the emphysema caused by anything, do you know? Do you have pain from the emphysema? I’m curious to hear what your doctor says about the Esbriet, as I know it may not be super effective for CPFE but maybe it is worth a try? Hearing a poor prognosis is so hard, I understand that. My heart is with you Susan!

        Connect anytime…. I’ll be thinking of you!
        Charlene.

      • Susan Howitt

        Member
        August 30, 2018 at 2:38 pm

        Hi Charlene

        Yes where I live is beautiful a natural park,  it is one thing I have going for me, very pure mountain (mini ones) air and a sparse population, I live in a hamlet of 13 houses, 4 of which are holiday homes.
        If you ever manage to get to France I have a little rental place in a small hamlet surrounded by forest, wish I could do pictures here, tried no success. My daughter will manage it when I can’t.

        Doctor wont put me on Esbriet at the moment as I have also tested 99% positive for Systematic Scleroderma, can I have any more fibrotic diseases in one go? So got more MRI scans and x rays and tests next week.  With the CPFE it is a mainly male dominated disease 90% male, hopefully females are tougher, I intend to be, the Scleroderma is female predominant.

        When I was on much higher doses of Prednisolone I could have eaten a scabby dog !!! on the dose I am on now 1/2 tab  20mg no problem and no cough, well not much any way, changes in temperature, some one smoking nearby, things like that still make me cough,  I am being taken down to 10 mg with the possibility of going back up if needs be by being given two prescriptions.

        Possibly the emphysema was caused by cigarette smoke by my own volition and in the place of work?   Fell like I am wearing a bra two sizes too small and tight.

         

        Been out to a restaurant tonight, was  careful what I ate but one little treat and my gall bladder is playing hell.

         

        Bon nuit    Sue

      • Charlene Marshall

        Member
        September 3, 2018 at 11:28 am

        Hi Susan,

        Nice to hear from you and so sorry for my delay in responding. I’ve been away celebrating the last weekend of summer at my cottage, and am just returning home to get back to work 🙂

        How was your weekend?

        Where you live sounds so beautiful, very picturesque in my mind! It is actually how I would envision France to look if I ever went there. There are more than 13 homes in a row on the crescent where I live so I’d imagine it would be a big difference for me , but one I’d welcome as I like more sparse area(s) than dense populations. I would definitely let you know if I ever make it to France! I think it would be amazing to have the opportunity to meet some of our forum members in person.

        I’m so sorry to hear of the systemic scleroderma Susan, that must have been really tough news to digest on top of your CPFE. Fingers crossed that your additional tests and x-rays go well this week, and I believe you can be tougher than other men facing CPFE!

        That’s great news about the current prednisone dose, that a) you don’t have much of a cough anymore and b) you don’t have the wicked cravings. I still do when I get put on that steroid, although I am not on it on a regular basis right now thankfully! I hope you get to taper it down even further if you can tolerate it.

        I hope you’re feeling well these days and as always, thanks for writing. It’s nice to hear from you!

        Enjoy your evening 🙂
        Charlene.

    • Patricia Hayden

      Member
      September 11, 2018 at 3:10 pm

      I was diagnosed with Polymyocitis in 1995 about age 35. Really have no idea except maybe hereditary. When they finally diagnosed me, along with other medications they put me on prednizone. 40mg. I went batty. I was put on anti depressant and that helped. I take pred. now for the Poly and still take the antidepressants. Although my choice is to take neither, I know the results are better being on rather then off the meds. I absolutely could not handle the pred. with out the Antidepressants.
      Just FYI I was diagnosed with PF about 10 years ago. but the progress had been slow and only in Oct of last year did I lose my breath ( I believe after all the fires) I live in Washington State. I am only 64 years old and do not feel life as far as my health is concerned has not been to kind to me. I will keep pushing on. I have had a lot of wonderful experiences in my life.
      I am currently making ways to get on the lung transplant list at the U of Washington. Not totally sure if this is the right decision as of all the research I have done but I have to make a decision one way or the other. I would like to end my life not on a breathing tube. I want to golf again someday and ride horses, be with my family and my dog, Buckie. Hopefully I can share more on this wonderful blog that we have been gifted with.

      • Susan Howitt

        Member
        September 12, 2018 at 3:28 am

        Hi Patricia
        Sorry to hear about your Polymyocitis, nasty disease. I totally agree with you about end of life, I will fight tooth and nail not to be on a breathing machine, in fact I am going to ask the professor for a paper to sign on my next visit stating that I do not want a breathing machine, no matter what. Hope the idea of a lung transplant works for you, me, no chance (not that I want one) at my age, 72, and with the complications I have. Can’t imagine being on prednisolone at 40mg for such a long time, although I didn’t have many bad reactions from it when I was on an emergency dose(exacerbation) of 100mgs, reducing, over 6 weeks, dizzy, and soooooo hungry, were the worst, don’t think I went batty but then people probably wouldn’t have noticed much difference on that score any way lol. I only have my eldest daughter out here and my three rescue dogs, they need me as much as I need them.
        Take care

      • Charlene Marshall

        Member
        September 17, 2018 at 9:24 am

        Hi Patricia,

        Thanks for getting in touch, although sorry to hear you’re dealing with Polymyocitis. That sounds very unpleasant and difficult to deal with! Have they since discovered that it is hereditary? Glad it is being managed with prednisone, although 40 mg would have made me go batty as well. Are you still on this dose? Also glad you found a combination of the prednisone with the anti-depressants, that is really important to find that balance. Have they linked the PF diagnosis to the poly? I know sometimes PF can be secondary to a chronic inflammatory condition.

        I wish you the best as you embark on the lung transplant journey at UW. I know it isn’t for everyone, but kudos to you for investigating your options. Have you begun the formal assessment for lung transplantation, Patricia? I hope you get many more years to golf as well, and spend time with Buckie 🙂

        Cheers,
        Charlene.

  • Terry Moriarty

    Member
    April 17, 2018 at 10:03 pm

    Hi,

    I’m Terry and I went on prednisone when I was diagnosed in 2007, 50 mg. I was on it for about 2 years. I was weaned off of it because I gain about 60 lbs. I had no other side effects.  In 2011, the disorder became much worse and I went back on 50 mg. I had lost 30 lbs. This time I gained 100 lbs and totally craved food. It was all I could think about. After about 2 years, I weaned myself off again.  I’m losing the weight, but it is a real struggle. I don’t ever want to go on it again.

    Yes, it helped in the beginning. But, as time went by, not so much. Not worth the weight gain. I had no other side effects.

    • Charlene Marshall

      Member
      April 18, 2018 at 10:14 am

      Hi Terry,

      Welcome to our PF forums, and thank you so much for contributing to this thread.

      First, I am so happy to hear from you and that your diagnosis was in 2007! That was over 10 years ago and for me, that gives me so much hope in terms of living with this disease beyond the prognosis/expected years.

      Did you find with the high-dose prednisone (50 and 100mg) you struggled increase appetite as a potential cause of the weight gain, both times? I know this can sometimes happen when your appetite is significantly increased, but that it can sometimes happen to patients just being on the drug period, and not necessarily eating more. This is definitely one of the necessary evils of this medication, as is the “prednisone balloon face” as I’ve heard it called. I agree, and don’t want to stay on it long because I don’t find the benefits of it (ie. helping with IPF-related side effects) outweigh the negatives like significant weight gain or puffiness.

      Thanks for sharing your experience with this steroid Terry and welcome again!

      Best,
      Charlene.

      • Terry Moriarty

        Member
        April 22, 2018 at 6:57 pm

        I’ve only been on 50 mg of prednisone.  I wonder if anyone could handle 100.

        As to your question on appetite, I only had the cravings for food the second time I went on prednisone.   The first time, I just gained weight.  Given I was already obese, any weight gain was bad.  In fact, the first time, I was trying to lose weight and succeeding, only to find out that weight loss was a symptom of my disorder.   Seems to also be a symptom that IPF is progressing, which is happening to me now. I’ve been gradually losing weight, but I’ve been trying to. So is weight loss due to the diet or IPF? I hope the former.

        All I can say is that the first time on prednsone I didn’t have these food cravings and the second time I did.  When I went off prednisone the second time, those cravings went away.

        As to puffy face, I’m obese, so I guess my face is always puffy (g).  I didn’t notice that side effect.

      • Charlene Marshall

        Member
        April 23, 2018 at 9:49 am

        Hi Terry,

        Thanks for your reply regarding your experience with prednisone.

        I couldn’t imagine a 100mg dose, and the side effects that would come with it. I know that post-transplant patients are on quite a high dose initially and then are tapered down but I’m not sure what that dose is.

        Regarding the weight loss, yes apparently it is a common symptom of IPF but unfortunately not for a good reason. One of my best friends is a nurse practitioner and she was explaining that (among other things) one of the reasons that IPF patients often lose the weight is due to the excess calories being burnt by the body just trying to breathe. Then of course there are the side effects of medications that often take away our appetite, plus the shortness of breath that can accompany eating when our disease progresses. Did you read

        Kim Frederickson’s awesome column about preparing for lung transplantation? In there she summarizes her discussion with one of the transplant dieticians about weight loss, and now that I am feeling a bit better (I was feeling awful for about two weeks) I may give it a shot. I don’t have to lose the weight, although we all feel better when we do. Worth a read if you’re interested 🙂

        Cheers,
        Charlene.

  • Aishia Moaishia

    Member
    April 18, 2018 at 6:18 pm

    I take both Pirfenidone and 20 mg Prednisone daily. I started at 40mg per day for 14 days then titrated down by 5 mg per week until I got to 20mg per day. My dr says this is long term for me. I feel really lucky that I don’t have the increased hunger or mood swings (I don’t think). I am tolerating the med well overall.

    • Charlene Marshall

      Member
      April 18, 2018 at 8:01 pm

      Hello my friend Aishia!

      Thank you for sharing your experience with prednisone (and pirfenidone as well, actually)… always so great to hear from you and how you’re managing with everything. I am also happy that you don’t have the nasty side effects that many do with this drug, and I hope that continues for you.

      When you started on it, were you diagnosed with your ILD yet, or was it in response to a flare up? I often  get put on it (or my dose increased) when I have an event/exacerbation that compromises my ability to breathe. I haven’t been put on it permanently yet though, although I am certain that its coming. I am glad to hear you haven’t had many bad side effects though, this gives me hope 🙂

      Thanks again for sharing and chat soon,
      Charlene.

  • Cliff Cleary

    Member
    April 19, 2018 at 1:31 am

    Hi All,

    It’s quite an eye opener to read about other IPF sufferers experiences from another country, over here downunder we can sometimes be a bit behind. I have also found from  reading articles and this forum and from other sufferers that medication and dosages can differ greatly.

    If I find out if there’s any problems with Pirfenidone and Prednisone together I will post. I  was put on Prednisone for my Anca Vasculitis which had a positive effect on my IPF as well, my Renal specialist said they didn’t want me on it to long because of the side effects. I also have Osteoporosis, apparently Prednisone has a negative effect on the bones.

    Aishia, interesting to hear you’re on both, I will definitely be discussing this with my doctors.

    Cheers Cliff

     

     

    • Charlene Marshall

      Member
      April 19, 2018 at 4:39 pm

      Hi Cliff,

      Yes it certainly has been interesting to see how both medication access, and dosages/interactions differ between countries it seems. I think that is one thing that is so beneficial about our forums are the people who are from different parts of the world and can share their experience. I know I have benefitted from this on more than one occasion!

      I have also heard that osteoporosis can be linked to long-term prednisone usage. This is a big topic on our facebook / social media platforms right now.

      Please do let us know what your doctors say, I’d be curious to hear of his/her thoughts about the interaction between prednisone and pirfenidone.

      Thanks again for writing and cheers!

      Charlene.

  • Pamela Martin

    Member
    April 24, 2018 at 11:05 am

    I have IPF for nine and half years, Prednisone, I am on and off it, I had been on it permanently for a number of years and gained over 3 stone,

    side effects, Weight gain, some time tremors though only slight, not sleeping well,  I had asked to be taken off them I was taking 2 a day to help me reduce weight, I lost the weight straight away and only take them when needed.

    now pro’s when I get an exerbation or a chest infection I know immediately to take them again, starting with six a day then five four ..etc. until day 6. And almost straight away I am well again, I have been doing this for the past 3 years.. and best way to manage symptoms.

    • Charlene Marshall

      Member
      April 24, 2018 at 9:59 pm

      Hi Pamela,

      Thank you for sharing your experience with prednisone with us! It is a drug that I love to hate, as I am on and off of it as well and it does benefit me when I do need to take it, although I hate the side effects. With your tremors, did you notice an improvement or that they stopped once you stopped taking Prednisone? If I may ask, how long were you on this steroid before you noticed this started happening?

      I have some at home still and maybe I will set them aside for when I have an event flare up and take them for a few days before going into a doctor (I hate going into the ER/hospital if I can help it due to the germ exposure I know I am getting just from walking in). Do you just keep filling a prescription for them and keeping them on hand for when you need them?

      Thanks again for sharing!
      Warm regards,
      Charlene.

  • Cliff Cleary

    Member
    April 26, 2018 at 3:40 pm

    Hi Pamela,

    Interesting to hear of your use of prednisone, my doctors are reluctant to keep me on them and at the moment I’m on a very low dosage. I’m currently taking 12.5mg per day.

    I would like to know what dosage your pills are and what others are on. I’m in Australia and it doesn’t seem that prednisone is being used much for IPF here.

    Cheers

    Cliff

    • Charlene Marshall

      Member
      April 27, 2018 at 12:09 pm

      Hi Cliff,

      That is interesting to hear re: prednisone not being used on the regular for IPF in Australia. Do you find it is used when people have problems breathing in general such as an asthma exacerbation, or is this something you’re aware of? I only ask because usually when I have issues breathing, even before my diagnosis when they thought I had asthma, prednisone was the first remedy they reached for. That said, I usually am on a small dose (10-15mg) and have only been on a large dose once after a very scary exacerbation.

      Curious to hear from other Australians out there too, to see if this is their experience with prednisone also. I hope you’re doing well Cliff 🙂

      Charlene.

  • Terry Moriarty

    Member
    April 26, 2018 at 6:07 pm

    Hi Cliff,

    I was working in Canberra when I was diagnosed with Hypersensitivity Pneumonitis, a category of IPF.  That was in 2007.  After doing a lung biopsy, the doctor put me on prednisone, 50 mg.  I went back to the US in 2008 and in 2009, my US doctor started weaning me off it.  So, 10 years ago, it was used in Australia.  But they did the lung biopsy to determine what I had because the doctor didn’t like prescribing prednisone.  Felt it was a dangerous drug, but the risk was worth it in my case.

    • Charlene Marshall

      Member
      April 27, 2018 at 12:11 pm

      Thanks for sharing Terry! This is so interesting to me, that doctors seem to think so differently about the drug. In general, I am sure the benefits outweigh the risks but it seems like some people are put on it for management and regularly (per their doctors wishes) and other doctors don’t want their patients to be on it long. I wonder what the literature says? Just out of curiosity, I might have to do a lit review on this 🙂

      Take care,
      Charlene.

  • Jay Turbes-s

    Member
    April 26, 2018 at 9:34 pm

    As a back-to-basics question: why is prednisone prescribed in the first place?

    • Charlene Marshall

      Member
      April 27, 2018 at 12:15 pm

      Excellent question Jay!

      From a quick literature search, this is my understanding of how prednisone helps patients with lung/breathing issues specifically:

       

      Prednisone is a corticosteroid that works against inflammation, and can be used to control an inflammatory response within the body. With a reduction of inflammation in the lung specifically, the process of oxygenation can take place more seamlessly, allowing the body to receive oxygen-rich blood easier. 

      This didn’t come directly (I didn’t want to copy and paste word-for-word) from a website, but basically my summary of understanding how prednisone can be helpful for those of us living with a lung disease. A quick google search helped with my understanding, but what I find so interesting is what seems to be the perception of this drug in long-term uses for patients with IPF.

      Good question for sure…

      Charlene.

  • Terry Moriarty

    Member
    April 26, 2018 at 10:01 pm

    Hi Jay,

    I don’t know what it does, but when I went into the hospital my blood oxygen level was 73. When I left 3 weeks later, I was at 90+ with no supplemental oxygen. I was on 50 mg of prednisone. I could barely take a breath when I went in. I was breathing fine when I left the hospital. so, it made me able to breathe.

  • Pamela Martin

    Member
    April 27, 2018 at 10:51 am

    Hi Charlene,

    I can say when I am not on the Prednisone the tremors stop, if I am a high dose when I get an infection or breathing problems the higher the dose sets of the tremors, I have asked for a supply for these instances saving a trip to GP or hospital, I find I can manage quite well and I only use them in these instances … previously I had been on 10mg for several years …. but now I find taking a hard dose as in 6 a day 5 a day etc works very well for me killing off infections or making me feel less week ….

     

    Cliff… Prednisone is widely used here in Ireland, I think I had tried everything when I was first diagnosed and my lung capacity was 39% then came espirit or prifidone I was one of the first patients to go on this drug and was on it quite successfully for over 6 years, though my liver has taken the brunt, so I am off all anti fibrotic meds now… I can honestly say my general well being is better, not experiencing side affects, but on the negative side the dreaded cough is worse, and night time breathing is sometimes a problem I keep myself fit and my lung capacity is 51%… which is brilliant nine and half years I’m doing ok thankfully.

    • Charlene Marshall

      Member
      April 27, 2018 at 12:19 pm

      Hi Pamela,

      Thanks for your response and letting me know. I think I might consider this for myself to see if it could be a pro-active way to manage any breathing issues / flare ups without going to the hospital. I’m not sure my doctor will go for this but it is definitely worth an ask! Glad your tremors stop when your use of prednisone stops. I guess it is true, this is the drug we all love to hate!

      Thank you also for sharing your story which included an increase in lung capacity! This gives me a lot of hope Pamela 🙂

      Did you participate in pulmonary rehabilitation to help with this, or did you establish a fitness routine on your own that worked for you? In any case, I am happy for you and inspired that you’re still doing well after 9.5 years!

      Cheers,
      Charlene.

  • Pamela Martin

    Member
    April 27, 2018 at 1:32 pm

    I really do encourage anyone with IPF to keep up a fitness regime, I had gone to pulmonary rehab classes for a number of years,  and always try to walk, even if it’s indoors in a mall/shopping Centre, I am very involved with ILFA (irish lung Fibrosis Association) on the ilfa website there is a pulmonary exercise class designed for IPF, we have just made a dvd on yoga for the same purpose, which will be able to download soon, I think it’s my positive attitude and determination to stay well

  • Charlene Marshall

    Member
    April 28, 2018 at 3:40 pm

    Hi Pamela,

    Thanks for sharing – I think your advice and encouragement of keeping up with fitness (as much as possible) is important for IPF patients. Good to know about your commitment for walking even outside of your pulmonary rehab classes. My friend’s Mom who has suspected IPF, but NSIP confirmed, was told not to walk inside at the malls/shopping centres due to germ exposure. I am on a medication that compromises my immunity, so typically I try to avoid crowded areas like that but I do enjoy walking outside now that it is nicer here in Canada. I also have a treadmill to walk inside, but it sure is nicer to be outside 🙂

    Wonderful information you’ve shared about the ILFA, thank you! Will you let me know when the yoga video is available to watch? I’ve wanted to start yoga for a long time but have just never done it yet. I can maybe watch your video and learn some tips & tricks.

    I hope you continue to do so well Pamela, and thanks again for sharing.
    Warmly,
    Charlene.

  • Dave-Wendy Barrer

    Member
    June 11, 2018 at 11:25 am

    thanks for all the posts,  I just went through a treatment that was interesting to say the least.

    After a 2nd lung CT scan after 5 months from diagnosis,  the doctor was shocked at the rate of progression

    Background: Not 100% sure yet between Stage 4 Sarcoidosis to Chronic Hypersensitive Pnemanites.  All under Pulmonary Fibrosis,  but seems to be accelerating as fast as IPF

    Went from no- to oxygen 24/7 in 90days  increasing to 4 over the last month.  Lots of what I call jabs waves and solid pains.

    I thought 89 Sp02 was low until I seen an 85  then 82 the 78 and 74 -69.  under 74 I’m looking for a way to sit down a quick as possible, I don’t want my wife to have to try and catch me,  At this point i can’t climb a fight of stairs without dropping under 85

     

    That same day he scheduled me into the hospital..

    Just went through an intense treatment of 3 days of solumedrol with calculated out to 300-400mg of prednisone per day

    Was administered in a hospital setting for safety

    Seemed to handle to process very well and was let out on the 3rd day with a new prescription of 50mg daily of prednisone. (with Calcium Pills)

    DAY  4 was tough felt like my lungs were being ripped from the inside out,  spit up lots of chucks and nasty stuff.

    DAYS 5 and 6 less intense solid stand pain with some sharp barbs,   day 6,  and it was very sudden, I took a breath and it was deeper and more open than in a long time,  I felt it open up.  that afternoon starting turning down the O2

    DAY 7  sat for hours without oxygen on maintaining 95-97 Sp02, put on a tank and went out and cut the lawn taking rest and being careful.  Did some light home chores, and grabbed a shower,  (no oxygen) After resting went back to no oxygen all afternoon and throughout the evening,  went to sleep without it,  but had one coughing fit in the night.

    DAY 8 only grabbed oxygen for moderate to heavy movements  and went out for diner,  eating drinking socializing for about 6- hours,  no oxygen the entire time!!  (made sure we had all the back up with us though),  It had become very stressful,  being prepared all the time.

    Day 9 some rotating pains are back,  lots of controlling your mind, knowing your body is undergoing extreme changes, its surprising how simple questions can evoke such extreme thoughts.  I’m  getting used to taking time to respond and giving myself the space to think about what I’m doing.

    I think the doctors thought process was to quick start an event that could shock the lungs and see how receptive they would be to a treatment.  Has anyone else had any treatment like this?

    Dave and Wendy

    • Charlene Marshall

      Member
      June 12, 2018 at 12:07 pm

      Hi Dave & Wendy,

      Thank you so much for joining the forums and sharing your experience on this thread.

      What type of treatment did you just finish, was it a course of prednisone in response to a flare up or virus? If so, I do hope you’re on the mend.

      Was your second 2nd CT scan scheduled Dave, or was this reactive to something happening? I ask because I feel as though I should be getting a second CT scan done as well, as I only had one upon diagnosis in April 2016. I get chest x-rays done regularly but I know this often doesn’t know fibrosis progression. I am so sorry to hear of how quickly your disease is progressing, how disheartening. I know it isn’t necessarily diagnosed as IPF yet, but any talk about you starting either of the two anti-fibrotic medications for IPF (Esbriet or OFEV)?

      I’ve never experienced sats as low as 74, that must feel terrible for you! Do you monitor it with a home oxygen probe? Even with your oxygen on, do your sats drop under 85 when climbing stairs?

      Oh, now I am reading more about the treatment you endured. I suppose it is good that it was administered in hospital so you were safe, as that is a lot of prednisone to deal with. Why did they initiate this for you Dave? It sounds maybe like inflammation, and that the treatment broke up whatever was in your lungs opening them up and allowing for better oxygenation. Would you say that is correct?

      I also am curious to know if anyone else on our forums had anything like this… it sounds very intense, but possibly beneficial? I haven’t heard of anything like this before though, thank you so much for sharing.

      I look forward to getting to know you a bit more on the forums, and appreciate the time you took to write this all out for us. Sorry for all my questions, but if you feel upto it, I’d love to hear back from you.

      Sending you best wishes!
      Charlene.

  • Dave-Wendy Barrer

    Member
    June 12, 2018 at 10:43 pm

    I will answer as best I can,  these post have been very helpful from everyone,  it was the education we were looking for. Thanks you for all your efforts.

    I could not reasonably say either a virus or a flare up,  and i think the specialist was puzzled as well.

    Part 1) The discussion was 250-1000mg of solumedrol  for 3 days administered intravenously over 45 minutes, 250 was the decision and they seemed to be calculating it directly against Prednisone 300-400mg as a comparison.

    Part 2) 50mg prednisone daily at breakfast with food and 1 hour later calcium pill for 30 days (10 days so far)

    Solu-Medrol(methylprednisolone) is a synthetic corticosteroid used for severe or incapacitating allergic conditions, dermatologic diseases, endocrine disorders

    Solumedrol is similar to prednisone which is an immunosuppressant drug with powerful anti-inflammatory properties used to treat a variety of conditions. High doses of Solumedrol (1000mg) help to halt the acute inflammatory process

    We had the 2nd CTscan scheduled at 6 months,  but at 4 and half, I had felt it was going very badly and could feel the changes weekly. They had requested me starting Prednisone for a few months for a correction before the scan,  and we asked why don’t we scan before we start for a benchmark.  At the hospital, we requested copies of all scan and x-rays and with photoshop I was able to overlay my own slides and check,
    I was put on Oxygen 24/7 that day,  the hospital was scheduled for the end of the week.

    I haven’t heard of or discussed any of the two drugs you mentioned.

    (I’ve never experienced sats as low as 74, that must feel terrible for you! Do you monitor it with a home oxygen probe? Even with your oxygen on, do your sats drop under 85 when climbing stairs?)
    2 weeks ago yes… even with oxygen with minor exertion I would drop rapidly 85 and less ,  but my recovery was also very very rapid 2-3 min I could be back.
    ( Oh, now I am reading more about the treatment you endured. I suppose it is good that it was administered in hospital so you were safe, as that is a lot of prednisone to deal with. Why did they initiate this for you Dave? It sounds maybe like inflammation, and that the treatment broke up whatever was in your lungs opening them up and allowing for better oxygenation. Would you say that is correct?)
    That seems accurate… they had talked about a white cloud as well.  they were calling this process a “Hail Mary” that I had nothing to lose at the rate I was progressing.

    Now at  Day 10  Regardless something is definitely happening,  My lungs opened up more today…. I haven’t breathed this deep in 6 months.  staying solid 93-95 relaxing manageable 88-91 moving around.

    There seems to be a distinct difference now between the pains in the lungs and the association with the low oxygen,  hard to explain and it could be the drugs talking.   Before with coughing , distress and pain 02 would drop in relation to it.   Now i can have all the pains but still have a high 02 level.

    Worked lightly in the yard today for over an hour, had company,  and feel all my muscles for some reason tonight. Its somewhat spiny and euphoric,  trouble concentrating and some moments of internal anger.  the changes are extreme and i know the pain is still there,  but the change is quite profound.

    I will keep monitoring, …  you get a very deep understanding about mobility and limitations, its quite a sobering reality.  we will be happy with these good days . and keep moving forward.

    cheers Dave

    • Charlene Marshall

      Member
      June 13, 2018 at 8:47 am

      Hi Dave and Wendy,

      Thank you so much for taking the time to reply to all my questions today regarding your experience. I so appreciate your willingness to share information with me!

      I am so glad to hear the forums have been helpful for you, and I agree re: how helpful everyone’s posts and contributions are. I’m glad this is the education piece you need, and if there is ever specific information you want discussed on the forum, please feel free to make a post or message me directly.

      Sorry to hear of such an onset of symptoms for you, that must have been scary! Did they happen quickly, or were they progressive or predictable (usually like a virus acts, when you can feel it coming on). It must have puzzled the specialists, especially if it happened quickly!

      I’ve never heard of this drug before (solumedrol) but have done some looking into it since you mentioned it. I actually asked a friend of mine about it who is an RN and she said it has been around for a long time, and is quite effective in addressing the acute inflammatory process, as you say. Is the prednisone you’re taking now an oral tablet then?

      Also interesting about your scans and deciphering them yourself after obtaining them. I often think about doing this, especially since I feel so “well versed” in reading chest x-rays now. The two drugs I mentioned are specific anti-fibrotic medications to treat IPF, so if they haven’t diagnosed you for certain with PF, especially of idiopathic etiology then they may not have brought up the Esbriet or OFEV options as treatment for you. This would make sense.

      I am so very pleased that whatever this treatment protocol was, that it seems to be working for you! I can’t imagine how good it feels to be able to breathe in deeply after 6 months of not being able to. I will keep my fingers crossed and hope this continues for you … wow! May you continue to be able to keep moving forward and doing the things that you enjoy. I hope the muscle aches you’re feeling is simply just from using muscles you haven’t in awhile after doing hobbies you enjoy! 🙂

      Sending you nothing but the very best Dave, and thank you again for sharing your experiences. Please do keep in touch!

      Kindest regards,
      Charlene

       

  • Dave-Wendy Barrer

    Member
    June 16, 2018 at 7:57 am

    The overall symptoms came gradual,  and I was being treated for asthma first with the Blue puffer for a few years, increasing assuage until moved to the red symbacourt,   more and more with increasing breathing difficulties, after the the 4th breathing test after about 3.5 years it was seen as something different, and we started the process of the new diagnosis,

    Even with hindsight i cant see how our medical system could have reacted any more efficiently or responsibly. each step was logical and seemed to correct the condition at the time,  until it didn’t.

    The progression over the last few months,  must have taken my lungs past a tipping point,  I can say the term “scared” has never come into play,  I would say concerned

    I will gather those scans and try to send you a picture of how and what we did to do the overlay,

    Update on the day 11, 12 ,13:  continued 02 improvement two full days with no oxygen on and slept the entire night with out it. very light movements and walking around unassisted as well.

    The lung pains are still strong,  and still feels like a sack of potatoes, driving in a car seems to giggle just a bit too much,  highway driving is fine,

    The new portable system that plugs into the car has changed mobility situation 100% I barely use tanks  anymore,  Although i’m going to strap on my jet pack and go mow the lawn….

    Anything you need,  we are here.

    cheers!

    Dave

    • Charlene Marshall

      Member
      June 17, 2018 at 7:30 am

      Hi Dave,

      Thanks, as always, for your thorough and thoughtful reply. It’s great to hear back from you!

      My journey to diagnosis sounds somewhat similar to you in that I was given the blue inhaler for asthma as well, then the red Symbicort one as well. Once the Symbicort became too difficult for me to get the medicine out of it, as the turbuhalers require a deep breath in, this is when things seemed to become a bit more focused on what might really be going on with my lungs. Suddenly the doctors seemed to pay a bit more attention. How often do you do pulmonary function tests (PFTs)? Right now I do them twice a year, however, these didn’t really indicate anything seriously wrong with my lungs. As my respirologist told me a couple of times: “hmm, you’re quite the mystery”. I remind him of this regularly to this day 🙂

      So glad to hear of your satisfaction with the healthcare system and doctors trying to get it right. Since IPF presents so differently in people, I understand that there is no algorithm in diagnosing people and doctors just try their best. It is nice to hear of someone who is grateful or appreciative in the steps they took to getting you diagnosed.

      I think concerned or scared are totally valid feelings. I feel like that on the regular, and have tried to put coping strategies in place to replace those feelings with other things so they dont swallow me up. They can overwhelm me very fast, along with anger!

      You must feel so much relief to be living without the oxygen, and having such a change in your abilities since the protocol you just finished? Even on my “good days” when I don’t require being on the oxygen 24/7 I feel a sense of freedom! I’m so glad you continue to improve in terms of your oxygen requirements, and I only hope the pain eases for you as well.

      I remember the freedom of getting my portable oxygen concentrator and being able to charge it in the car. This was an awesome sense of freedom for me too! Hope you enjoyed mowing the lawn with your jetpack 😉

      Enjoy your weekend Dave and thanks again for connecting.
      Charlene.

  • Dave-Wendy Barrer

    Member
    June 21, 2018 at 5:45 pm

    Sorry for taking so long on the CT Scan Disk information

    We were (are able) to request copies of all our procedures,  it takes a couple of days and they just load it onto a CD for pick up at imaging.

    It seems the disk has a working 3d Imaging application with all the sides organized into a few folders.

    One folder in particular has over 750 images of 3 completely different views. I placed red dots beside them.

    When the second scan was done you can open the two files in separate windows and review the images side by side…a very powerful and easy visual reference of indication of any changes,

     

    First time inserting a picture…see if it works.

    CT Scan disk

     

    • Charlene Marshall

      Member
      June 22, 2018 at 2:24 pm

      Hi Dave,

      Thanks so much for getting back to me regarding this, and no worries at all for any delay! I am currently waiting on a CD of my MRI images, so I know the hospitals can take some time to produce these things for us 🙂

      I can’t believe how many images the special machines and cameras within those machines can take, producing so many different angles. My MRI was 90 minutes long, I can only imagine how many images were taken!

      In terms of inserting a photo, this is a very specific process that can kind of be a bit of a pain. Basically to insert an image into the topic thread (here), it has to be a web URL that is copied and pasted into the “source” line once you click on the image above the text box. If it isn’t uploaded somewhere online it is hard to load a photo. Does this make sense? If not, I can see if I can get written instructions from our tech team on how to do this. You can also email it to me if that is easier: [email protected] but totally dependent on your comfort level Dave.

      Hopefully this helps a bit but do let me know if it doesnt and I’ll see if I can provide clearer help. Hope you’re having a great day!

      Charlene.

  • Dave-Wendy Barrer

    Member
    June 21, 2018 at 5:53 pm

    Cant seem to configure and insert the photo….is there a guide for this?

    thanks dave

  • Dave-Wendy Barrer

    Member
    June 21, 2018 at 9:04 pm

    Charlene

    Thats very interesting with your journey to diagnosis experience, it really makes we wonder how many people on on a similar path.

    Thanks again, here is an update on the last 5 days or so on the 50mg of prednisone after the “treatment”

    Might have pushed it too hard cutting the grass,  on the weekend, paid for it with some extra pains.

    Treatment continues to be successful in the “quality of life” reference

    Continue to get stronger with a more stable oxygen level while I sleep and have been off nighttime O2 for 4 nights.

    In a normal relaxing state staying steady at higher numbers as well.

    Lung pains are still strong but not as sharp and stabbing as before,  seems to settle into a more steady overall pain with the feeling of having a seat belt still on.  I am trying not to take any pain medication during this time to better evaluate the changes.

    Daytime, light duty, walking slow,  I am now able to achieve without oxygen for the most part,

    Breathing still deeper and the crackles or rails have almost vanished.

    Side note:  there is a tingle in my neck,  and I haven’t found any reference anywhere, it starts a couple of inches just below the skull and radiates down 6-8 sometime 10″ not quite to the upper back..  Its very electrical, like the commercial Dr ho’s pain treatment. very intense I wouldn’t call it painful at all somewhat relaxing.  I can trigger it with a light walk allowing my o2 to get around 85.

    Side effect of frustration and anger is definitely heighten 2 questions at the same time is 3 to many. Focus can difficult.

    Just waiting to here for appointments to ILD clinic for more follow up.  ill post the picture when i figure it out. overall i would say a huge success so far

    cheers Dave

     

    • Charlene Marshall

      Member
      June 22, 2018 at 2:36 pm

      Hi Dave,

       

      Great to hear from you, as always – thanks for your reply!

      Yes, it was an interesting journey to diagnosis for sure, and sometimes I thought they were right and that it was just some sort of persistent virus and other times I knew it was more based on my unpleasant symptoms. I played several sports growing up, and I loved to be underwater and to swim, so when I couldn’t catch my breath during the most basic of activities, I knew something wasn’t right… however, I wasn’t always the best advocate for my health at that time!

      I did read somewhere that unfortunately patients with IPF are usually misdiagnosed, or a definitive diagnosis isn’t made for 2-3 years after symptoms begin to present, and they begin to seek consultation from a doctor. The scary part of this is that by then the disease has progressed and often times the damage in the lungs is irreversible. As a result of this, I suspect many others experienced a similar path that I did to getting diagnosed unfortunately…

      Thanks for the update – would you say you still have pretty persistent pain, like on a regular basis and not necessarily in response to increased physical activity (ie. cutting the grass)? If so, what kind of pain is it: dull, stabbing, sharp etc?

      I am so happy that you’re able to be off oxygen in the night! Are you off mostly during the day still also? My friend’s Mom who has NSIP was on oxygen for nearly 18 months constantly, and is now off it – her doctor said she has done a complete 180 and no longer being evaluated for transplant either – and the sense of freedom she describes is amazing. I hope this is your experience as well!

      Is the pain similar to the feeling of a seatbelt across your chest diagonally then? Interesting about the tingle in your neck, I hope this doesn’t turn out to be anything serious. I have neck pain often, but I actually think it is in response to my concussion and whip lash injury as opposed to anything to do with IPF.

      Goodluck with the ILD clinic, I hope it goes well and I am so happy to hear that overall you feel as though this treatment was a success. That is great news! Continually wishing you well 🙂

      Until next chat!
      Charlene.

  • Gary R. Denig

    Member
    June 26, 2018 at 8:38 am

    Hi Charlene,

    I was Dx with PF in October 2015 and started on oxygen 2 lpm. By April 2016, my PFTs dropped so my oxygen was adjusted up to 4 lpm 24/7. I was on Pirfenidone for about one year with no noticeable improvement. Starting last October 2017, I started on 10mg Prednisone daily.i have not had any side effects and tolerate it well. For sleep, every night for 30 to 60 minutes I practice visualization, relaxation using a video which focuses on positive healing messages. Before I go to sleep I want my mind to be focused on “I can do it”. At first, I noticed s slight bump in my weight but that has been corrected by watching my intake more carefully. I am going through the evaluation process for a double lung transplant. I’ve been evaluating the costs short term and long term though it does create stress. My prayers to you and all who suffer. May you find peace, rest, and comfort.

    • Charlene Marshall

      Member
      June 27, 2018 at 10:08 am

      Hi Gary,

      Welcome to the PF forums and thanks so much for sharing your experience with us and contributing to this thread!

      So sorry to hear of your PF diagnosis, although I am glad to hear the doctors were proactive in starting you on oxygen therapy. I know supplemental oxygen is a pain (I use it too), although it is so good for our lungs and other organs to be sufficiently oxygenated and I know others have had a hard time getting their physicians to agree to oxygen therapy. Have your PFTs stabilized, or do they continue to decline? Unfortunately mine continue to decline…

      Glad you aren’t having any negative effects from the prednisone, that is so good to hear as most people really struggle with this steroid. Thank you for your tips on helping with sleep too, it is certainly a good idea to start “winding down” 30-60 minutes before bedtime and visualization activities are such a good idea!

      Sending you best wishes in your transplant evaluation, please let us know how you make out if you are comfortable doing so?

      Sending you prayers and best wishes always. Thanks again for connecting with us Gary!
      Kind regards,
      Charlene.

  • paula

    Member
    June 28, 2018 at 8:30 am

    I became fast friends with the fat fairy while on prednisone. I am not willing to take it any more. Personally, at least for me, I saw very little benefit from taking it.

  • Charlene Marshall

    Member
    June 29, 2018 at 7:02 am

    Hi Paula,

    Nice to hear from you, I’ve been wondering how you’re doing my friend!

    I always giggle when you write the “fat fairy”. It’s not a laugh at you, it is a laugh with you because I can certainly relate to that sentiment from my own experience with prednisone. While it seems to help me when I need it, I absolutely hate that drug! No point in taking it if it isn’t helpful for you, I completely agree.

    Hope you’re keeping well!
    Charlene.

  • paula

    Member
    June 29, 2018 at 7:10 am

    Morning Charlene.
    Yeah the fat fairy has discovered I am off the Esbriet and I have gained a few pounds. I started the OFEV yesterday hopefully the fat fairy will get the hint and leave. lol

    Sorry I have not been on more, dealing with increasing SOB and in the process of moving. So much fun.

    How have you been lately? I think of you often and hope you are doing well.
    Paula

  • Charlene Marshall

    Member
    June 29, 2018 at 8:51 am

    Hi Paula,

    Good morning to you too 🙂

    Lol, I hope the fat fairy buggers off for you as well! How is the start of OFEV going for you so far? I know it is still very new, having only started it yesterday but hopefully no issues for you so far! It’s so hard not to gain weight, or even lose weight with IPF I find. I just cant do the exercising I need to due to my SOB. Frustrating!

    No worries at all re: not being online more. Where are you moving? Sorry you’re dealing with increased SOB, that is so frustrating and I can certainly relate. Is it hot there? The humidity has found us here and it is causing me lots of issues.

    I’ve been doing okay, although a bit overwhelmed with all my appointments lately. Had one every day this week, so am happy to see that the weekend is finally here and I can catch up on some sleep and relaxing. Hopefully heading to the beach!

    Great to hear from you and thanks for your kind words and thoughts.
    Chat soon,
    Charlene.

  • Susan Howitt

    Member
    September 10, 2018 at 4:57 am

    Hi have been taken down to 5mgs of prednisolone per day ,  been on lower dose now for a week, yeh no wanting to eat a scabby dog now but funnily enough the dizziness has increased, no idea if this is my diseases, now have 4 that are attacking my lungs, or if it is the tablets, other than that I feel ok, it is too warm here still by day, up to 29° and I struggle but the evenings and nights are quite cool, 10° and although I have to then put on thick sweaters I am much more comfortable.  Professor is not sure I can go on to Esbriet because of other problems.

    Brexit also might affect me badly, no idea how much of the talk is true but if I am on Esbriet, it is wickedly expensive, 2,000€ per week, so I read, GB might just pull the plug on me as at the moment it is a reciprocal agreement.

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